Sometimes Twitter does your head in, and I’m not talking about the trolls.

Last week DiabetesUK tweeted

Possibly seeing a marketing opportunity, @DiabetesAU (NOT it must be noted Diabetes Australia but the twitter handle of Natalie Wischer, who is apparently the CEO of the National Association of Diabetes Centres NADC) was quick to tweet her whole-hearted endorsement-presumably on behalf of NADC, as indicated by the first person plural.

We agree! We will discuss this & more at the Australasian Diabetes Advancements and Technologies Summit (ADATS)

Yippee!! I thought, how great there’s going to be a whole conference on diabetes technology in Australia AND they are totally into patient choice!

I rush off to the link so thoughtfully provided at the end of the tweet to book tickets, only to find this conference is patients excluded. You need a health care provider number to register. So no patient choice here BUT never fear patient choice is going to be discussed by a bunch of doctors and DNEs. My irony meter is going off the scale.

Don’t despair though fellow-patients, despite the ban on our attendance, I’m assured that the patient voice will be heard. One person with diabetes and a health care professional are going to present on this “very important topic”. Ah right, I check the program, a person with diabetes is going to get 5 MINUTES in the program to present the consumer perspective and a psychologist (who doesn’t have diabetes) is going to get 20 MINUTES to speak about psychological impacts.

Whilst I guess 5 minutes is better than no minutes for a consumer voice to be heard-I’ve got to say I find the 5 minute time slot rather insulting, especially as the speaker, @RenzaS is an experienced and professional presenter with many years experience at DAVic and in advocacy, it’s not like she can’t handle a longer time slot. 5 minutes is the allocation for “hearing the patient voice”. Hmmmm.

That aside, however, neither a 5 minute consumer slot or a psychologist presenting professional insights is patient inclusion, nor does it have anything to do with supporting patient choice in technology. Inclusion and patient choice is about allowing patients to access information to enable informed participation in healthcare.

I understand that professional organisations run conferences for their members and sometimes those organisations exclude non-members-it’s their conference after all. I also understand prohibitions on “consumers” attending conferences where drug companies advertise their products.*

This is fine, just don’t boast about your support for patient choice when your implementation of that support is to discuss it at a conference of health care professionals from which patients are deliberately excluded. This just serves to highlight how very keen many professionals are to exclude “patients” from the dialogue of healthcare.

Without access to information, the patient will never be able to take control of their health decisions, I wonder if that’s the real reason we’re excluded, as the old saying goes, knowledge is power.

*@DiabetesAU tweeted to me that patients could not attend because of pharma sponsorship of the event. I have perused the program http://nadc.net.au/wp-content/uploads/2017/03/ADATS-Program-26.6.17-zip.pdf as at 7pm 3rd July 2017 and I can find no disclosure of links to pharmaceutical or other commercial enterprises at all. I would have thought transparency on commercial sponsorship would have been desirable to those attending, it is to me and I’m not even subject to the rules on pharma marketing.